As an IT professional in Australia and having taken several years time out to care for several family members with terminal or chronic health disorders (the Australian Govt provides a means tested very basic pension for carers), it became clear to me that we all need more 'self empowerment' in the management of our own health care. From these combined experiences I developed a 'Global Knowledge and Research Portal for Mental Health' which has two entry points : 1. for 'newbies at http://www.mentalwakeup.com and 2. for Researchers/clinicians/advocates at http://www.communities.mentalwakeup.com. I dont (no one else is connected with it either) make any money from the Mentalwakeup website and there are no plans to do so - its goes against my principles about the purpose of the site. I spent 8 months full time developing it, as a self funded R&D exercise (aside from the many preceeding months of research) as I felt it essential to do something constructive and positive to help self empower and improve the lives of people with chronic or terminal health disorder and their families and to share what I learn't from my experiences - I believe this a key theme of what Health 2.0 is about.

Just saw this due to today's (3/10/09) tweets..
An early and coterminous version of social media is the group visit. I just had a patient at one of my Drop In Group Medical Appointment Visits say: This is great. I not only get my own needs met, that I thought brought me in, but I learn how other people care for themselves, and get tips from them. That's how I learned about fish oil, from another patient in the group. I started using it, and now, I don't have as much joint pain. I would not have thought to bring up this pain in a visit, I'd lived with it for so long..."

Another version of many to many communication, participatory health care.

The idea that patients should be partners in their own health care, is a good one. Roanne Weisman's book "Own Your Health" (HCI 2003) has been promoting it by discussing conventional and alternative treatment options - and telling inspiring stories of patients who have done just that with amazing results.

Coincidentally, my newest book (co-authored with Roanne Weisman) is called Health20 - Tap into the Healing Power of Water (McGraw Hill 2007).

Ever since the Internet started, the 'participatory" idea has been around.

Alexa Fleckenstein M.D., physician, author.

Great to hear Mark, yet another reason for everyone in the Mid-Atlantic area interested in Health 2.0 to do their best to attend on September 12. It's on my calendar,

Ted

Te reason I like the definition in this blog post is that it stresses the role of the patient and the community. While we seek to refine the definition we must try to retain the critical participatory role of the individual and the community in the re-engineered health care system.

I am using this definition to guide the HealthCamp discussions at:
http://barcamp.org/HealthCampDc (Sept 12th) and http://barcamp.org/HealthCampNy the following week at the Web 2.0 Expo.

Thanks Andre and Ian - I think we are all learning what's missing from Health 1.0 in this process and it looks like your improvement is around an individual's own health information. Thanks for being open to putting another one out there!

My feeling about this is that it can never be done and that's fine. Disk space is cheap (relatively speaking) and every idea helps all of us change people's minds and then their behavior,

Ted

Hey Ted - I did some more word smithing and came up with this:

"Health 2.0 is participatory healthcare characterized by the ability to rapidly share, classify and summarize individual health information with the goals of improving health care systems, experiences and outcomes via integration of patients and stakeholders."

I had "and communities" at the end Andrea but it started to read like the begats.

This is what I'm talkin about Ted! The three words I see in this definition pretty much sum it up for me: participatory, information and community.

We have the knowledge and the opportunity now to change the way things work and I want to be a part of that.

Great stuff!

Sure make it hard.
From your definition I think the concepts of:
-participatory healthcare, we the people can participate, reshape the health system are critical and lacking in my definition.

I prefer stakeholders to patient because part of the concept is being able to share the info with people who would have never seen it before and as I said before the ability to move/share individual rather than excluisvely grouped data. I've left patient in the definition below - it's redundant because of stakeholders but deserves emphasis.

Here's a try:

“Health 2.0 is participatory healthcare characterized by the ability to rapidly share, classify and summarize individual health information between stakeholders in partnership with the patient to improve the health care system, experiences and outcomes.”

Hi Ian,

Thanks for writing, the more participation the better. I reviewed the definition on your blog, how might you marry the ideas you mention above? Feel free to suggest something,

Ted

Hey Ted,

Just to play devil's advocate; by your definition the defining aspect of Health 2.0 is engagement/participation of stakeholders previously excluded. But the data and information for Health 2.0 is already out there on the internet through pubmed, www and other sources. However, the data is grouped, summarized or otherwise depersonnalized which causes the disconnect between the parties involved.

I think what your definition is lacking is that a description of the quality of information that is shared. The ability to rapidly share individual infomration is new whereas sharing grouped information is old. The fact that a patient can now drill down from a hospital report card to their own medication list all on the same website is new, unique and the very nature of Health 2.0 www.waittimes.blogspot.com

Ted, Dave -

Excellent definition and experiment in crowd-sourcing!

"We can be partners."

"We can participate."

We sure as hell can!

That should have been:
http://barcamp.org/HealthCampMd

This is a great definition. I am going to use this at HealthCampMd this weekend (6/14) - http://barcamp.org.HealthCampMd